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My now seven year old son developed epilepsy at the end of December 2012. Last week the doctor wrote me that they recently think (many EEGs later) that he has CSWS. When I began to read about it, I became very worried.He is on Keppra and the ketogenic diet. They just added Onfi to his regime in response to this new diagnosis. I want to seek a second opinion on the diagnosis. Does anyone have recommendations on where to go, preferably in the United States? Does anyone have a child with CSWS who would be willing to share their experiences with me? Thank you.

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11 Replies |Watch This Discussion | Report This| Share this:Is there anyone out there with a child with CSWS?My now seven year old son developed epilepsy at the end of December 2012. Last week the doctor wrote me that they recently think (many EEGs later) that he has CSWS. When I began to read about it, I became very worried.He is on Keppra and the ketogenic diet. They just added Onfi to his regime in response to this new diagnosis. I want to seek a second opinion on the diagnosis. Does anyone have recommendations on where to go, preferably in the United States? Does anyone have a child with CSWS who would be willing to share their experiences with me? Thank you.

Welcome to Epland/Epilepsy Community. I do Hope someone is Lurking & will step in w/ More support & Info. Just keep in mind that you & your son are Not Alone. We Will be here for you.

I am interested, too. Why? I myself have just recently discovered (w/in the past 5 yrs) I have Wavy Line Syndrome, after a portable 72hr EEG was done. All my Previous EEG's (1-2hr) had been Normal (no Spikes or Wavy Lines, but, I wasn't asleep for them) for 30 yrs. My DR neglected to tell me this was a seizure syndrome. I learned from PPL on Facebook. (You Mite find others', there, to talkw/, also.) My understanding of my Syndrome is that it occurs mainly in children. In their Sleep w/ no apparent activity. I am a Senior Citizen. And the DR did not Add any new meds to my regimen. My tonic-clonics have been controlled for over 25 yrs on Phenobarbital 180mg

Want a Second Opinion? This site has a List recommended by others' from all over the states w/ Ep. http://www.epilepsytalk.com/ But, you Need to Search for an Epileptologist (seizure Specialist) They are listed, too.

I, also, noted epilepsy.com on my Google Search had a conversation on this subject by 2 Dads who are trying to raise awareness of your sons' disorder/syndrome. Have you visited that Site? (strange, the date was 2012, too.) They, too, have the same list Phylis' does. And there is no need to join either site to read the articles.

May I ask what your major concerns are? And do you keep a Daily Journal for your son? Please read our info, located in Helpful Tips.

Welcome to Epland/Epilepsy Community. I do Hope someone is Lurking & will step in w/ More support & Info. Just keep in mind that you & your son are Not Alone. We Will be here for you.

I am interested, too. Why? I myself have just recently discovered (w/in the past 5 yrs) I have Wavy Line Syndrome, after a portable 72hr EEG was done. All my Previous EEG's (1-2hr) had been Normal (no Spikes or Wavy Lines, but, I wasn't asleep for them) for 30 yrs. My DR neglected to tell me this was a seizure syndrome. I learned from PPL on Facebook. (You Mite find others', there, to talkw/, also.) My understanding of my Syndrome is that it occurs mainly in children. In their Sleep w/ no apparent activity. I am a Senior Citizen. And the DR did not Add any new meds to my regimen. My tonic-clonics have been controlled for over 25 yrs on Phenobarbital 180mg

Want a Second Opinion? This site has a List recommended by others' from all over the states w/ Ep. http://www.epilepsytalk.com/ But, you Need to Search for an Epileptologist (seizure Specialist) They are listed, too.

I, also, noted epilepsy.com on my Google Search had a conversation on this subject by 2 Dads who are trying to raise awareness of your sons' disorder/syndrome. Have you visited that Site? (strange, the date was 2012, too.) They, too, have the same list Phylis' does. And there is no need to join either site to read the articles.

May I ask what your major concerns are? And do you keep a Daily Journal for your son? Please read our info, located in Helpful Tips.

I just read some material on this. I now understand some of your concerns.I noted Surgery was recommended. If you have questions about Surgery, please ask Angie or Dana. They have been there, done that.

Dear Candi, Thank you for your messages. I am most concerned about consulting with an epileptologist who has some knowledge of CSWS. Because it is such a rare syndrome with such a bleak prognosis, I want to get additional opinions. My son currently has no developmental delays. If he does have CSWS (which his EEGs suggest is the case), I want to help him as much as possible in what's presumably an early stage of the syndrome. I consulted the list you recommended. I don't think I saw anyone listing this as her/his specialty. If anyone knows of a good epileptologist who has treated children with this syndrome, I would be very grateful if s/he shared this information with me. I do not know about Wavy Line Syndrome. Most of what I read about CSWS suggests it is a childhood epilepsy, but my overall sense is that they know little about it and subsequently little about what it might be related to. Many thanks and best wishes to all, AS

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Report This| Share this:Is there anyone out there with a child with CSWS?Dear Candi, Thank you for your messages. I am most concerned about consulting with an epileptologist who has some knowledge of CSWS. Because it is such a rare syndrome with such a bleak prognosis, I want to get additional opinions. My son currently has no developmental delays. If he does have CSWS (which his EEGs suggest is the case), I want to help him as much as possible in what's presumably an early stage of the syndrome. I consulted the list you recommended. I don't think I saw anyone listing this as her/his specialty. If anyone knows of a good epileptologist who has treated children with this syndrome, I would be very grateful if s/he shared this information with me. I do not know about Wavy Line Syndrome. Most of what I read about CSWS suggests it is a childhood epilepsy, but my overall sense is that they know little about it and subsequently little about what it might be related to. Many thanks and best wishes to all, AS

Please clik my user ID & email me. Or join Facebook & friend Jeanne Phelps. A Group I belong to may be able to help. We aren't allowed to post Drs names on WebMD, which is why I am suggesting you Friend me or email me.

I was hoping our Friend, who is joining us to offer Advice/support, would have replied to you by now. She was having Issues posting last nite. Hopefully she will be w/ us soon. I asked Friends in my Facebook group about Info & Boston Children's seems to be the preferred Hospital w/ DRs who Have dealt w/ this issue. I Wish I could give you the name of the DR to contact. Clik my Profile Pic. My Email Addy is included in my Profile/Epilepsy Journey.

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Report This| Share this:Is there anyone out there with a child with CSWS?I was hoping our Friend, who is joining us to offer Advice/support, would have replied to you by now. She was having Issues posting last nite. Hopefully she will be w/ us soon. I asked Friends in my Facebook group about Info & Boston Children's seems to be the preferred Hospital w/ DRs who Have dealt w/ this issue. I Wish I could give you the name of the DR to contact. Clik my Profile Pic. My Email Addy is included in my Profile/Epilepsy Journey.

welcome to the family. This is Angie, one of the young ladies Candi mentioned earlier. I don't have any knowledge/familiarity of your son's condition but I am here to offer you support in any way I can. Scream, rant, or shout out your feelings/frustrations whenever necessary.

welcome to the family. This is Angie, one of the young ladies Candi mentioned earlier. I don't have any knowledge/familiarity of your son's condition but I am here to offer you support in any way I can. Scream, rant, or shout out your feelings/frustrations whenever necessary.

Hi AmySara,
My son was diagnosed with epilepsy at 6 years old. He is now 10. 2years ago we were told he also has CSWS. He has many learning problems and tested very low on the IQ test. He was put on Onfi with the valporic. The Onfi made him sleepy all the time but one year of EEGs showed normal. We were very relieved. We cut his Onfi down and he was not falling asleep at school anymore . Then we just had one last month that showed us abnormal EEG with CSWS again. Now we are back to a higher dose of Onfi. Because he has always had learning, memory and speech problems we do not know if anything will get better if they can get rid of the CSWS. I do know the Onfi has worked in the past and hope it works again.

Thanks for your Reply!

Report This| Share this:Is there anyone out there with a child with CSWS?Hi AmySara,
My son was diagnosed with epilepsy at 6 years old. He is now 10. 2years ago we were told he also has CSWS. He has many learning problems and tested very low on the IQ test. He was put on Onfi with the valporic. The Onfi made him sleepy all the time but one year of EEGs showed normal. We were very relieved. We cut his Onfi down and he was not falling asleep at school anymore . Then we just had one last month that showed us abnormal EEG with CSWS again. Now we are back to a higher dose of Onfi. Because he has always had learning, memory and speech problems we do not know if anything will get better if they can get rid of the CSWS. I do know the Onfi has worked in the past and hope it works again.

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